As reported in the Chicago Tribune; Jason Matthews spent his 69 years immersed in only the most thrilling of adventures. After three decades in the CIA, Matthews used eloquence and…
As reported in the Desmoines Register; At age 7, Mason Sieck was already a part of the tight knit world of firefighters. The youngest in a long line of firefighters,…
As reported by CNN; Tabitha Haly still manages to make time for her life-long craft as a singer-songwriter and live performer while acting as a vice president at JP Morgan…
As reported in Gloucestershire Live, Chantelle Parry has a few years head-start on an experience people emerging from this pandemic with symptoms of long COVID may be about to go…
Not everyone in the little people community is advocating for the controversial drug that’s promising to increase the growth of people with achondroplasia, the most common type of dwarfism. The…
For small patient groups, creating momentum towards rare disease solutions often seems futile. To tackle such expensive and extensive endeavors, rare communities find strength and hope by putting their minds…
The coronavirus pandemic’s effects have wormed their way into every aspect of life, and those of us who spend a lot of time engaging with the medical world know that…
As seen in the Journal MDPI, chronic myeloid leukemia only got its name in the mid-1800s, when doctors drew together the category based on the occurrence of a “suppuration of…
The rare liver disease primary sclerosing cholangitis (PSC) may impact just .01% of people, but the extremely pernicious disorder's attacks on the liver mean bearers of the disorder account for…
As Parkinson’s diseases slowly erodes a person’s control of their movement, many normal parts of life become much more difficult. In a new study in Brazil, “Evidence-Based Recommendations for…
Sometimes it's hard to pick apart the cause of symptoms. Am I anxious because the bus is late or because Covid-19's insidious shadow is still lingering all these months later?…
Just as our emotions control our the body, determining our posture and expression and tensions; our bodies are our feeling devices, with the sensory input and muscle tension in turn…
As reported in Business Wire; VerSIM Life, a company that uses computational sciences to create novel machine learning to aid drug development, has announced that they are launching a pharmaceutical…
As reported in PR NewsWire; this March, Calliditas Therapeutics AB announced they have submitted a New Drug Application (NDA) for their novel oral solution, Nefecon, to treat primary IgA Nephropathy…
Charcot-Marie Tooth disease (CMT) may be the most common inherited disorder of the peripheral nervous system, but that only puts the official patient count in Denmark at about 22.5 cases…
As the pandemic shifted cocktail hour onto zoom and professors posted their full course material online, many rare patients reveled. Not because we weren’t suffering through the pandemic too, but…
As reported in NewsWise; rare drugs are few and far between, with a cliental of less than 200,000 Americans dissuading drug companies from taking on the enormous charge of developing…
As reported in News Wise, these oncologists don’t like their options. They want to provide patients with the best possible options to tackle the lethal cancer mesothelioma, but their hands…
As reported in NewsWise, as rare diseases get their time under the microscope, growing evidence uncovers medical distinctions. New lines are drawn, delineating new disorders to be defined and classified.…
As reported in Biospace, Taysha Gene Therapies wants to eradicate devastating genetic epilepsies and central nervous system disorders rooted in a single genetic mutation. That’s going to take some innovative…
According to a story from Sano Genetics, Sano Genetics, BenevolentAI, C4X Discovery, and Patients Know Best expect only the most from their novel collaboration. Together, they are pooling top expertise…
If you’re a caregiver for a loved one with a rare disease, it’s not presumptive to assume you work tirelessly managing your loved one's busy appointment schedule, daily stretch routine,…
As reported in Biospace, a collaboration between biopharmaceutical company AstraZeneca and BenevolentAI has for the first time used AI to identify a molecule that plays a key role chronic kidney…
As reported in a press release in PR Newswire; in Stockholm this week, Dan Kastner received the Crafoord Prize, one of the top achievements in science worldwide, after his work…
Sometimes it's hard to know why you're not sleeping well. Is it because you're nervous for tomorrow’s meeting, or from that impulsive 2PM cup of coffee? For people with Parkinson’s,…
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